Pages

Saturday, December 31, 2011

Kayli was admitted to the PICU at a local hospital because she was having heart rate drops and horrible seizures. She has been in the hospital since Thursday afternoon. She has had a battery of tests to find the reason for changes in her seizure activity. We know she has an infection(s) but can not figure out where. There is suspicion she has more than one infection. She was started on an antibiotic and has been doing well with it, no allergic reactions this time! Yeah! Tonight, I noticed something in her feeding tube that looked like blood. Upon further examination, there were a LOT of clots in her feeding tube. The clots were tested, and they are blood clots from her stomach. We do not know as of yet why (bowel obstruction, twisted bowels, ulcer) and the surgeon is already in an emergency surgery with another emergency surgery lined up after that one. She is cramping in her stomach, but otherwise she is quiet and is not crying anymore. I will update more tomorrow. Please keep her in your prayers. From our family to yours, Happy New Year!!! <3

Monday, December 26, 2011

Kayli and family had a Very Blessed Christmas!!! Kayli spent Christmas Eve with some extended family and had great interaction with them! She was looking back and forth at people in conversation, and was tracking her new portable mobile all the while moving her lips as if saying something to us. Santa gave her a small (portable), soft, musical drum and she loves it! Kayli was a very happy girl for the Christmas Eve and Day Celebrations! Kayli's gift to us...On Christmas Eve, Kayli turned in her crib from her back to her left side! It is amazing to see her purposefully positioning herself! Her seizures seem to be getting better since she has discontinued the Phenobarbital, and her ear infections are almost healed! I found that she also LOVES turkey (I snuck her a taste!) and she sucked on a candy cane till it broke! Her (middle) older brother, Jacob warned me..."Mom, if you keep giving her tastes of our food she will be mad because she will want to eat it and can't..." My response was "well, I guess then she will just have to figure out how to eat again, won't she?!" LOL What a Blessing it was to spend Christmas with all 4 of our kiddos, together in arms reach this year! Thank you God! <3 Blessings for you all, May your travels be safe, Hugs be tight, and Love be contagious! <3

Saturday, December 24, 2011

Thank you all for your support. We have received many inbox requests to set up the paypal account for donations, and I have FINALLY got around to getting it verified. The paypal account is kwhistler@live.com Please know, the blog is to share Kayli's amazing journey with you! We are very Blessed, as you will see as you read more about our whole Family.

My Christmas wish for all, is that YOU see the Miracles He has given YOU! We wish you a Merry Christmas from Rob, Kelly, Stephen, Jacob, Niko, and Kayli Whistler! <3

Friday, December 23, 2011

I have VERY exciting news that I HAVE to share!!! The dr's have told us that Kayli lost her abilities to suck and swallow after the hypoxic event and that her soft palate had NO functionality or movement anymore. They said there is no known treatment to strengthen a soft palate if ALL tone is lost. Today in speech therapy, Kayli had a suck so strong that she almost pulled the tool off the therapist's finger! The palate has to have tone to close off and build a vaccum to suck....Her soft palate is working!!!!

I kept telling everyone who would listen that I thought Kayli was swallowing! The Dr's thought I was crazy! I also told them her cleft hard palate was closing, they said "that's impossible, palates never close on their own"....it's recently been confirmed, it's closed! ;-)

I hope that one day, the dr's realize that what is "impossible" to them, is simply the next CHALLENGE for Kayli!!!! Amazing!!! ♥

MY next step is to convince a scientist/dr that Kayi's recovery is worth a study! She has so much to teach the dr's! It is rare that someone survives a 32 minute cardiac arrest AND is functioning!!!! Then, add surviving T18 too!!!!

Thursday, December 22, 2011

Kayli is now able to reach up and hit her mobile while laying in her crib!!! AND Kayli stood up with her own muscle support without the stander (albeit, leaning against an exercise ball) 3 X's at 2-3 minutes each time! She is doing so much more than the dr's expected with T18, and is single handedly confuting the theory that nobody cannot survive, much less thrive, after an extensive hypoxic event!!! Excellent milestone for Christmas!!! Go Kayli!!!! ♥

Friday, December 16, 2011

I had a care conference meeting with one of Kayli's 3 orthopedics today because within the last 8 weeks, Kayli's left hip has come completely out of her socket (is displaced). Her right hip was already out (likely since birth) so now both are out. We, as her parents, have to decide what care we want to proceed with for Kayli. It is a VERY tough decision to make because there are complications that could ultimately cause her demise if we choose the optimal choice of aggressively invasive surgery.

Normally, when hips are displaced, there is minimal to no pain unless the ball of the hip is pressing against the hip socket. This puts pressure on the nerves, and literally crushes bone against bone. We have been told Kayli's hips are much worse than the worse case scenario for a severely affected CP pediatric patient. Most times, they can wait until the child is 4-6 years old for the most aggressive hip treatment. Kayli has surpassed the need for the most aggressive treatment, and she is only 2 1/2 years old. Kayli's ball and sockets are not touching directly yet, but Kayli is presenting with a lot of pain. Her left leg is turning in, and it is increasingly harder to open her hips/legs to change her diaper. She sometimes wakes up from her sleep crying from discomfort, and is not able to sit ring style with her abnormally placed hips. She is sometimes able to stand in her stander, on her tummy, etc with ease, but it is becoming more of an occasional comfort than regularity of comfort. Kayli has 2 Occupational Therapists and 2 Physical Therapists working with her every week (4 sessions a week) to maintain as well as increase range of motion. In the last couple of months, there is a rapid increase of severity of her hip dysplasia.

Goals for helping Kayli: Decrease/eliminate pain, gain functionality and range of motion, stay one step ahead of her realm of abilities by allowing the opportunities to sit and stand on own comfortably, and protect her from harm and/or irreversible damage in longevity.

The 3 options given to us include:

1. Do nothing new, continue with therapies and "let nature takes it course". This is a non invasive approach, where Kayli's hip dysplasia will continue to progress but pain should not increase in abundance until her hip bones collide. Then an aggressive surgery will be eminent if she survives in longevity but suffers in the days between now and then. Her abilities will be stalled and limited due to the pain, and lack of range of motion because of her muscle tone and hip dysplasia. Kayli's life is not threatened, but her quality of life will continue to decrease as the pain intensifies.

2. A surgical procedure called Hip Abduction. This surgery is minimally invasive with a few days (3) of hospital stay and no casting. The surgery is meant to release her muscles and give Kayli more range of motion. It is uncertain if this will increase, decrease, or have any affect on her current pain level. The hope would be that the affect of this surgery may last a couple of years, IF Kayli is involved in vigorous daily therapies, and sits with a cushion between her legs at all times. It is thought to be a painful daily life, as the muscles continue to be "conditioned" against their natural tone on a daily basis. There is a risk that her muscle tone will go in the opposite direction, and she will lose all muscle tone. It is essentially a "band aid approach" with minimal if any relief from pain. The only pro is that there could be more range of motion than she currently has, if the post surgical care is aggressively maintained. If Kayli falls ill, her muscles will not receive the care they need and her range of motion will fault back to pre surgery conditions or have little to no muscle tone at all.

3. An aggressive surgical approach, including an accumulation of 8 surgeries (4 on each hip) accomplished bilaterally in a total of 2 days. The first surgery will be on one hip, and if all goes well it will take 4-6 hours, with a goal of 4 weeks in a Spica cast (under rib cage to toes). Then 3-6 months later, the second surgery will duplicate the original hip surgery and Kayli will minimally spend another 4 weeks in another Spica cast. The hospital stay is lengthy (a week?) for each surgery. The surgeries include: A) Femoral Osteotomy~to shorten the femur and redirect it into the hip cup/socket. B) Acetabuloplasty~ to deepen the hip cup/socket. C) Capsulorrhaphy~ to tighten the hip capsule. D) Hip Abductor~ to release muscles.

This 3rd approach has been related to us to be the "optimal treatment" for Kayli, but the risks of the "optimal treatment" may outweigh the goals. Concerns for Kayli with the most aggressive approach include major blood loss (a common risk for this surgery). Kayli also has a history of needing blood transfusions after surgeries as her norm, so this is a critical consideration seeing the "normal" risks include an already profound amount of blood loss. There is a surgical consideration that the meds she is on can also cause an increased risk of blood loss or replacement. Once the surgery/treatment has been started, the other steps to the surgery HAS to be finished. In other words, they cannot start the first surgery (A) and end there. They would have to continue with surgeries B,C, and D to get the corrective outcome. If Kayli has a significant blood loss, they would still be forced to continue the surgeries and/or go back in several other times, putting her at higher risks for infection, blood loss, etc.

I was given two impressions today, one of medical opinion, and another of personal opinion. The medical opinion was to give Kayli the 3rd option, and without extenuating circumstances, the reccurance rate is the highest risk (having to repeat the surgery later in life). If Kayli's specialists feel the risk factors are within appropriate surgical release range, this would be the optimal treatment plan. The personal opinion was for my husband and I to think about Kayli's longevity and decide if the treatment to reach all of our goals for Kayli's outcome, outweighs the risk of complications that could realistically lead to Kayli's death.

We will be thinking long and hard about what is best for Kayli. We have always taken in all medical information, then pulled out the impertinent information relating to Kayli, and then tweaked the discussion to fit Kayli's goals and needs in order to come up with the best plan of care for our daughter. We are reluctant to rush into giving her the needed optimal surgery at the cost of loosing Kayli's life to the realistic risks of a major, non lifesaving, surgery.

I have a call in to the neurologist, suggesting he evaluate the request I have to give Kayli a CP treatment plan to help her with muscle spasms caused by her high/tight muscle tone. Her muscle tone is likely to be causing the alarmingly increasing unaligned bone growth in both her hips, as well as, her spine.

We hope to make the best choice for Kayli's growth and approaching abilities, while protecting her life. We are afraid we will regret our decision if she passes away at the surgeons hands with our choice to give her an aggressively invasive treatment vs. providing her with a low quality of life (in pain).

We are a family of 6, and we have been Blessed to have 4 children with special needs! Yes, they are all ours biologically, and no they do not all have the same diagnosis'.

Our oldest has Degenerative Disc Disease and has had 5 spine surgeries since he first broke his back (during a baseball game) when he was 14. He had MRSA, a staph infection resistant to antibiotics, in his spine and is allergic to the two antibiotics proven to fight MRSA....We almost lost him. God took control.

Our middle son has Autism (high functioning), ADHD (severe), Sensory Integration Disorder (doesn't feel pain), and EOE (allergic esophagitis). There is no cure, nor treatment for the EOE. It is enzymes deteriating his esophagus and causing scarring (high risk of cancer).

Our youngest son has an inoperable brain tumor in 2 parts of his brain stem (pons and medulla) and deep in his Cerebellum. He was diagnosed with Gangliaglioma (cancer) by CHOP, the Dean at Loyola, and many other reputable hospitals. He was too young for radiation, and it was inoperable (shape, location) so we put a port in and waited for it to grow more aggressively so we could treat ALL the cancer cells (it was thought to be our only hope!) The cancer grew slowly for about 6 months...then stopped! God has given us another miracle! The tumor is still there, but remains stable/not growing. Inexplicable in the medical world, but a miracle in our world!

You have met Kayli in the video. You can see her many steps to recovery and grace in her videos on You Tube...under the channel kellywhistler1. Thank you for the thoughts and Prayers! God Bless!

Wednesday, September 28, 2011

Not too long ago in Heaven, there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day, however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean?”, he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their hearts, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”

God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you, and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Love changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Kayli's Neurologist reports on her Brain MRI

Kayli's neuro called just now to discuss her recent brain MRI, taken 2 years after her 32 minute cardiac arrest. Kayli now has a diagnosis of 'Diffused Brain Atrophy' secondary to a Hypoxic Event. Simply put, Kayli's brain is complete...it is all there, only smaller. Her brain is only apprx 1/4 the size of a "normal" brain her age. Although Kayli's brain was completely intact, and fully functioning at birth and up to the cardiac arrest, the neuro stated it now compounds the primary diagnosis of T18.
Questions we asked:
1.What would you give as a prognosis, will Kayli's brain loss ultimately take her life? A: No, but Trisomy 18 has many complications and will likely be what takes her life. You can talk with a geneticist, I don't know enough about T18. (At this point, I "educated" the dr as to the spectrum of T18). :D
2. Will Kayli loose any more brain matter? A: No, her brain will not get worse nor better. Her function can get better though.
3. Is there anything we can do to help Kayli's brain growth? A: We do not know a lot about that, but there are studies of brain growth clinical trials for Cerebral Palsy and Brain Atrophy in Germany and Georgia. If you choose to consider experimental Clinical Trials, you can take her to Duke University in GA and talk to them about brain stem cell transplants. They might have support groups there or online for you.
4. Is there anything we can give her to enhance her brain growth/function, like DHA? A: Yes, DHA will help minimally and it is in her formula already.
5. We were told if her head circumference is larger, it means her brain is growing. Is this true? A: Yes, her brain can grow, but it will not grow back. She will always have only 25% of her brain. From what we understand, you can enhance the function of her remaining brain but she will never have a complete brain...it will always be diffused (smaller).
6. What do you think about Kayli's brain given her history of a 32 minute cardiac arrest. A: I am impressed with her functioning level. I have never seen a child or person alive with such extensive brain loss.
7. Have you ever heard of anyone living after a half an hour cardiac arrest? A: NO, I didn't know that was possible. I am amazed that she is able to function at all. You two have obviously taken great care to ensure her best care. I have known of only 5 or 10 minute brain trauma being alive and functioning, and that long is rare. It is remarkable that she is not only alive, but functioning with such a long amount of time without oxygen. Very remarkable... I've never seen or heard about that length of time!
8. Kayli has 6 at home therapies and 3 rehab therapies to help her brain co-ordination and function. Is there anything else beyond therapies that we can do to help her progress further, easier, or faster? A: No, that is GREAT that she is in so many therapies. That is why she is able to function! She is doing so well.
9. Would you be willing to keep Kayli as your patient even though she has T18 and an extensive history? Are you able to care for her, watch her med levels, adjust her meds, etc? A: Yes, definitely I will keep her as my patient! I will get her blood levels and we will make the adjustments over the phone so you don't have to bring her back in for that.
Hubby and I are sad about the loss our daughter has suffered, yet proud and amazed that our daughter is not only proving she IS compatible with life but is Loving life with T18 AND Kayli continues to challenge the neurologists by surviving and gaining functions after what is likely one of the longest Cardiac Arrests documented!
As far as Hubby and I, we will continue to advocate for Kayli, and follow her lead as we try to stay one step ahead of her and learn from her all at the same time.
May I remind you what I found in Kayli's brain MRI?...... a large heart shape! One of her ears is heart shaped, the other is in the shape of an upside down heart! Kayli is made of hearts! :D

11) Because we also worry overtime, but we work it through. Or we eat chocolate, ice cream, or fried food (which aren't reimbursable by insurance as mental-health necessities, but should be).

12) Because we are more selfless than other moms. Our kids need us more.

13) Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our families. And our friends, of course.

14) Because we can adapt to minimal sleep.

15) Because we understand our kids better than anyone else -- even if they can't talk; even if they can't gesture; even if they can't look us in the eye. We know. We just know.

16) Because we never stop pushing and advocating for all our kids.

17) Because we never stop hoping for them, either.

18) Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal -- even when it seems like our heads or hearts might explode.

19) Because when we look at our kids, we just see great kids -- not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever
.
20) Because we take our knowledge learned and pass it on...to others, or to help our other children
.
21) Because impossible doesn't mean limits in our world, it means a goal.
.
22) Because we learn from our children and understand they have more to teach us than some adults do!
.
23) Because we know a world where trust takes on new meaning
.
24) Because to the world we are one, but to one...we are the world
.
25) Because although we once thought we couldn't do it, we've found...we can!
.
26) Because when others feel sorry for us, we only see how Blessed we are and we pray for them!
.
27) Because we get to savor every developmental milestone longer than other parents do
.
28) Because we witness miracles all around us

29) Because we are humbled by the courage our children have
.
30) Because every birthday celebrates 365 days joy, triumphs, love, faith, hope, togetherness, Love, and Peace that we know we are where we are meant to be!

Our Family of Blessings: Summary of my family

I was asked to write a summary of our family, and thougt I'd share it on here with you:

Children are our Blessings in our life
At first glance, we may seem like the typical American family.
We are an educated family of 6. Our oldest son, Steve (17), is a junior in high school who loves baseball, welding, Nascar, and engineering. He has a part time job, and keeps his grades a priority, even in honors physics. Jacob (10) has a high IQ and has a unique ability in figuring things out while observing things all around him. He taught himself to ride a 2 wheel bike at 3 years old, and continues his love of bike riding. He loves to submit himself to an imaginary world while building train sets and is a natural fisherman. Nicholas (nicknamed Niko) (3) is our active little boy who shares a love of trains with his brother, and has a huge heart for helping others (no matter their age). Niko loves books, cuddle time, and has a desire to follow his older brothers whom adore him completely. Kayli (1) smiles, loves her baths, and has a spirit about her that has taught our family and the community so much, without even speaking a word. Although we interact, dream and love like a normal family, our circumstances are anything but typical. Each of our blessings has a serious - at times even life-threatening - medical condition.
One year old Kayli, was born with Edwards syndrome (Trisomy 18), a rare genetic disorder caused by extra material on the 18th chromosome. Kayli already has beaten the odds - half of all babies with the disorder are stillborn - only 10 percent live to their first birthdays. Kayli has certainly proven medical knowledge is disadvantaged when up against faith in God’s plan. She has surived and then thrived through open heart surgery at 4 months of age, a 32 minute cardiac arrest, endocarditis (infection of the heart), sepsis (an blood infection), a nursing accident that resulted in a trach, a surgical accident whereas the surgeon placed a feeding tube in Kayli’s colon instead of the proper placement in her stomach, which resulted in fecal pneumonia, additional surgeries, and a large abdominal hernia.
Niko (Nicholas) has an impressive, inoperable brain tumor , set in the Pons and Medula of his brain stem, and deep in the Cerebellum. Niko was originally diagnosed with Ganglioglioma (cancer) Sept. 15th of 2008. To confirm this diagnosis, Niko had a craniotomy for a biopsy. Loyola neurosurgeons, and Children’s Hospital of Philladelphia (CHOP) neurosurgeons concurred with the diagnosis upon examining the biopsy slides. Doctors in Chicagoland area, and at CHOP are now baffled with Niko’s tumor because although it was diagnosed cancerous…..it is not growing! Niko once lost his words, fell a lot, and woke up one day confused when we told him he knew how to go potty on the toilet (he no longer was potty trained). Now, he has regained words (although he is sometimes difficult to understand), is potty trained again, and wears braces to help his equilibrium difficulties when walking. Niko has a port in his chest that was to be used for chemo treatments. He has not had to endure the chemo treatments yet, as he is fighting the tumor on his own terms! Niko’s current treatments consist of port flushes every month, MRIs every 3 months (to monitor tumor growth), and a vigorous IEP schedule working to adapt his speech and motor skills challenges. Niko is very tolerant of his frequent trips to Loyola, and effortlessly shows us his amazing ability to adapt to his unique life challenges. Niko’s spirit inspires many people, and thus, he was chosen as a poster child for Make A Wish with Panera Bread a partner in sponsorship!
Brother Jacob, has Eosinophilic Esophagitis (EOE), which currently has no known treatment or cure. EOE is an abnormal number of white blood cells in the esophagus that causes swelling, and difficulties swallowing. The EOE is deteriating Jacob’s esophagus and is causing considerable scarring. With considerable scarring, comes a pronounced risk of cancer. Jacob was recently in a case study to help find a treatment for this condition. He is our hero! The trial medication did not help Jacob, but that did not deter him from helping others. Jacob also has mild autism (PDD) which challenges is social abilities, and severe attention deficit hyperactivity disorder (ADHD). In addition to his ADHD impulsivity, he has minimal natural consequences because he also adapts to Sensory Integration Dysfunction which limits his ability to feel pain triggers. Jacob’s life was threatened again just last year, because he had appendicitis and was not able to tell us the typical pain symptoms of the life threatening condition.
Eldest brother, Steve, has degenerative disc disease, which caused him to break his back while playing baseball two years ago. Degenerative Disc disease is not commonly found in patients younger than in their 70s. Steve was has endured 5 spine surgeries, and MRSA of the bone (from surgery). We almost lost Steve to MRSA because he is allergic to the two known antibiotics that fight the staph infection resistant to antibiotics. Steve will always be limited in his physical abilities. Steve continues to strive for his best in everything he does! Although he loves to work with his hands, he is researching how best to apply his great gift to retain academic knowledge and still apply his need to be hands on, with the limitations he adapts to.
I, Mom, am a former social worker, and cannot think about returning to work until the frequent surgeries required for my children are over. I have also been challenged medically of recent. I have a mystical MS diagnosis, with an abundance of documented brain lesions. Upon doing a spinal tap for the MS diagnosis, the neurologist and infectious disease doctors have encountered an inexplicable condition that appears to be chronic. I am currently undergoing additional tests to figure out the extent of my condition.
Our family has adapted to the scary hospital visits while one parent comforts the hospitalized child (never leaving them to endure the visit alone), and the other parent acts as a single parent at home. We often wonder how we survive the draining medical challenges and our children's growing medical expenses, then apply our faith and trust in the Lord. We have recently (fortunately, temporarily) lost our private insurance, due to my husband’s lack of working hours (he is in a union). Rob was laid off, due to the falling economy. Fortunately for our family, he is working again and we are hoping to get his private insurance again in Oct. 2010. We have sold many of our possessions at yard sales last year. We choose not to burden our community with our challenges, but would rather share our story to spread our faith in God, and loving support for our inspirational children, we call BLESSINGS. Our family is trying to focus on the positives in the midst of so much uncertainty.
The following is a quote from a newspaper article written about our family:
"Despite their struggles - perhaps because of them - the family is a loving, giving, tight-knit group. During one of Kayli’s frequent ER visits, Jacob wrote his sister a note telling her how much he loved her, and Steve sewed her a blanket. "Each one of our kids has adapted to the challenges in their life. They are resilient, and they are blessings," Kelly says. "We are just trying to survive and to keep it positive."

Yah!!!! Kayli is out of surgery and getting comfortable in her PICU room! We came up to the floor and saw her rolling through the halls! :-) She did GREAT! The surgeon was able to get a good central line in her left femur artery. He did a Nissen fundoplycation (wrap) so if she refluxes there is less chance for her to aspirate (reflux into her lungs, which can cause pnemonia). He was also able to close her abdomenal hernia and made her exterior scars prettier. :-) He was able to pull out her intestines and get a good look at her many adhesions from previous surgeries. Her colon is unexplainably enlarged now, but no other abnormalities were found there. The surgeon did find a Meckels Diverticulum in her Illius (small intestine). This is a congenital (birth) condition found in only 2% of our population. If the Meckel has thickened, it can cause bleeding ulcers (which can lead to death). Fortunately for Kayli, the surgeon had a reason to go in searching and happened upon the Meckels (hers was thickened already). This condition is not the cause of her digestive problems. It was just a lucky catch! Things happen for a reason...the "other" pediatric surgeon missed it and if we didn't acquire this surgeon's help, it would have gone unnoticed! The Meckel is being biopsied, but the surgeon thinks it was on it's way to doing harm to Kayli because it was already thickened!
The digestive problems and enlarged colon are solely due to a functionality problem that came upon her when the "other" surgeon accidentally placed her G tube in her colon instead of her stomach. Unfortunately for Kayli, she will most likely suffer from the affects of the mishap surgery for the remainder of her life.

Upon seeing Kayli now, in her PICU room:
Kayli has been very restless. Coming off sedation, she was very angry with the nurses. She woke up crying vocally, turned red, and had many tears. Kayli was in a lot of pain, which can cause an increase in seizures. She was having 15 second duration seizures about every 30 seconds. Her heart rate shot up to the low 200s and she de sated a few times into the 60s while having seizures in her PICU room. The attentive nurses and doctors here are supporting her recovery with many seizure meds and pain meds. They have noted aloud "Kayli is fighting the meds we are giving her"! She is proving once again she wants things her way, and has already presented her temper tantrums to them (right out of surgery!) lol She is sleeping peacefully now on a hefty dose of pain meds and seizure meds that make her pretty sedated.

Many commens have been made about Kayli's adorable "tu tu" outfit from DisneyWorld, her gorgeous long eyelashes, and yes....they've even commented on the many blankets from home (so she smells our scents instead of the hospital smell). The nurses and doctors here are supportive of her stubborn demeaner and acknowledge her temper tantrums as a strength of determination and a will to live.

Thank you all for your very generous prayers and support!!! You have made a difference in our lives today! I looked upon you for supportive words and prayers and you delivered!!!! I am so grateful for you, my family! I was once told by a close friend of mine.....friends are the family you choose! I couldn't agree more!!!

Kayli and her G tube journey

Kayli had surgery in the Emergency OR yesterday. 2 weeks and 6 days ago she had a G tube placed in her abdomen to replace the NG tube in her nose (for feeding). The surgeon placed the G tube in her colon instead of her stomach. Kayli was vomitting brown and green fluids. She was weak, her heart rate was in the low 80s. Kayli was in pain. She was having seizures. The dr increased her blood pressure medicine because her blood pressure wasn't stable. Kayli developed pnemonia because she apirated the discharge she was throwing up. The surgeon did not recognize the symptoms Kayli was showing. Upon asking questions, I was able to figure out that she wasn't absorbing the stuff they were getting through her G tube. I also came to the conclusion that the pnemonia was from the brown and green stuff she was throwing up (poop). I relayed me concerns to the surgeon, and she finally realized the extent of Kayli's condition. When Rob and I got back from our Make a Wish trip and realized how bad she was doing (they did not relay to us the extent of Kayli's condition), we asked for a GI dr. to examine her. We were shocked to discover the medical team hadn't explored this option. The GI dr ran some tests and found Kayli's G tube to be placed in her colon instead of her stomach. Kayli wasn't absorbing the medicines, nor the food she was getting through her new G tube because our colons do not absorb. Our colon is just a "storage area". Kayli was throwing up because they were filling her colon past the extent her colon could contain the fluids. The surgeon said this is the first time in twenty years she has ever done this. Unfortunately, it happened to our daughter. I asked the surgeon if it was because Kayli had an abnormal anatomy. She said "no, Kayli's anatomy is normal, I just placed it wrong". The surgeon "guesses" that when she pushed the G tube in, she took the colon with the tube. She said the tube went through her colon, and into her stomach. Keep in mind, the surgeon also punctured Kayli's instestine when originally placing the G tube and had to go into her abdomen to patch the hole. The surgeon can only guess as to why she did this. She can not explain for certain how or why she placed the tube the way she did.

Going into surgery yesterday, Kayli was malnurished. She has lost more than 2 lbs. since the surgery. The pnemonia she developed is from feces in her lungs. She is now getting triple antibiotics, since feces is toxic to that part of her body.

The surgeon went in yesterday to pull out the G tube, patch her colon, and put the G tube in her stomach. When the surgeon took the G tube out of her colon, Kayli's feces poured out "free" into her abdomen. The surgeon cleaned it out as best as she could.

Kayli will not be home for Christmas now, but is in the PICU (pediatric intensive care unit). She is in extremem pain (which they have not been able to control for her). She is not able to sleep because of the pain. She also has a fever greater than 102, coming out of the surgery. The surgeon stated it is normal to have a low grade fever, but not more than 101.

Please say a prayer for her. She is stable, as she is a strong, independent baby. Unfortunately, the boys have not seen her for weeks. We are very sad that she will not be able to spend her first Christmas with our family. Rob and I will be visiting her frequently, but it will seperate our family, since the boys are not allowed to see her due to the hospital's "nobody under the age of 18 allowed".

Going forward, I hope you all have a very Merry Christmas! I am excited to be celebrating Jesus' birth! I am just as excited to see my boys open their presents (this always brings me such joy!)

Second article about my family in the Courier Newspaper

Whenever I step foot into a hospital to photograph an assignment, a flood of memories overwhelm me. I'm reminded of visiting my father in the hospital as he was losing his battle with lung cancer. Maybe it is the smell of disinfectant that hits me. Maybe it's the incessant sound the medical monitors give off. Or it could be the movement of strangers circling around me at such a vulnerable state, which create beads of sweat on my forehead. I told myself I would try to steer clear of hospitals after my father passed. They make me nervous. Even though they are meant to be recovery zones, they are a symbol of loss to me.

A display of sheer hope by Kelly Whistler, of St. Charles, got me through this one.

I first met the St. Charles woman and her husband Ken — along with, and their four children — when former staff writer Charity Bonner and I followed a lead given to us by Maggie Dempsey, the homeless liaison for Elgin School District U46. We were told we were meeting a family in dire need of a miracle. I was not sure that walking into their lives would be a good move for me.

» Click to enlarge image

Kelly Whistler holds her 3 month-old daughter Kayli in her arms at their home in St. Charles. Kayli was born with a chromosomal defect called Trisomy 18, also known as Edwards syndrome. The condition has given Kayli a Ventricular Septal defect and an Atrial Septal defect, which affect her heart. This causes her to work harder having her heart pump faster for needed oxygen and blood circulation. Kayli has been on Hospice since her birth but her significant weight gain has given confidence to doctors who aim to operate on her heart at Children's Memorial Hospital in August 2009.
(Marina Makropoulos/Staff Photographer)

RELATED STORIES
• Video: Walking with the Whistlers

How to help
If you would like to help the Whistler family, send checks or donations to:

Loving Life Fund

c/o Kelly Whistler

Associated Bank

300N. McLean Blvd.

South Elgin, IL 60177

If you would like to make a donation in person, ask to speak to Jeff Garcia.

If you would like more information on trisomy 18, please visit www.trisomy18.org.
This is a family of six that laughs like you laugh. They play like you and your children play. But this family's burdened with severe medical problems. Their medical bills keep stacking up the longer their children survive. But that pile of debt is overshadowed by what really matters — keeping their kids alive.

The four kids, Steve, 16; Jacob, 9; Nicholas, 3; and Kayli, 5 months, all were born with rare medical problems. Kayli and Jacob may lose their lives to their birth illnesses.

But this is not the crux of the story.

This is about a family prevailing over those odds. When The Courier-News first published their tale, Rob was unemployed and Kelly hadn't worked for some time. Temporary financial relief opened up for Rob shortly after we met and I found myself spending more time with Kelly. I watched her be a champion for her children one day at a time. Uncertainty looming over their young lives.

Steve is allergic to both medications that would have cured Methicillin-resistant Staphylococcus aureus (MRSA), the infection he contracted after having back surgery for degenerative disc disease at age 14.

Almost no medical research exists for Jacobs's esophageal problem. He also exhibits severe ADHD and sensory integration dysfunction, which makes him feel no pain where pain should be felt.

Nicholas' brain tumor has abnormalities new to the medical field.

Young Kayli suffers from a chromosome disorder called trisomy 18. The diagnosis is not highly studied and there is a slim rate of survival — with most victims dying before their first birthday.

Kelly is faced with their medical conditions every day, but she wouldn't change her life for the world. She says she's learned a great deal from her children. The Whistlers' have accepted their role as parents of four children with rare diseases and that's the story I hoped to share.

The storm has calmed for Steve, but it hasn't for Nicolas. The little boy gets tested every three months to monitor the growth of his now stagnant brain tumors. Every day Kayli lives is a blessing. Despite the circus of medical activity surrounding them, they continue to be who they are — kids. When you walk through their front door you see just that — an impromptu chase through the living room, a flash of a smile from behind a pillow and toys scurrying by a coffee table.

I do want to thank our readers who sent the Whistlers compassionate letters and donations when we first published their story. Never underestimate the power of a handwritten note. Those warm prayers were a source of strength for Kelly. And the money helped the family stay out of a homeless shelter, which would have been devastating to Kayli's immune system.

If you have a chance, I urge you to hear Kelly's story firsthand in the audio slide show posted with this story. Sharing this story may help other families faced with these circumstances

Kayli is off the Bypap machine!

I just spoke with the doctor. Kayli is doing very well off the Bypap machine! He admitted the team didn't think she'd ever do this well. He said they certainly didn't expect her to be where she is at.

Rob and I asked for a probe (camera) to go down her bronchial tube for her left lung, to make sure her problem with her left lung a couple of days ago isn't because she has weak muscle tone.
He said they don't want to do the probe yet, because she is doing so well, they don't think it is still a problem (if it was low tone). It might have been a secretion that blocked her airway. The respiratory team is doing BD treatments, and suctioning her as needed and every 4 hours.

Kayli is now on a high pressure air canula (nose oxygen). She is only at 40% oxygen. It appears she is needing a flow of air to help her keep her saturation rate up, but not necessarily the oxygen. If she never improved from this point, she wouild still able to come home with minimal care.

We asked for an EEG on Kayli to check her cognitive brain function, because she is continuing to gain more activity clinically ( when looking at what she is able to do physically). The doctor said they will before she leaves the hospital, but it says more to them when they see her doing the things she's doing than looking at an EEG. She comforts herself by putting her feet together (like she used to do). She closes her eyes when she sleeps again, and when the light is in her eyes (room light or flashlight). Kayli moves her head and focuses on us most times now. She squeezes our finger when she is scared, mad, or in pain. She will not let go until she is calm again. Kayli cries when she is in pain, and stretches her hands above her head when she wakes up. She stretches her legs too. Kayli is showing signs of "Kayli" before surgery. The medical team is impressed with her, especially since they thought she would show NO signs of cognitive recovery after the first 4 days.

Kayli is leading her way to recovery. We are praying and hoping we make the "right" decisions for her. We continuously ask God for guidance, keep our hope intact, and check ourselves to make sure we are following Kayli's lead.

I, personally, can't wait to see how far Kayli is taking this miraculous recovery! I'm loving that I get to be in a front row seat for this miracle!

The plan is to keep her in the hospital for a couple of more days, to help her sustain her good health, and to make sure she is stable and healed completely.

I brought her car seat in her room, and told her it's here for her. We can't wait for our baby girl to come home and spend some more quality time with her!

In answer to a question... "Do the drs expect Kayli to live?"

Depends on the day. Most days now, they say she will live 6 months or so. They really don't know. They say she won't regain any more cognitive brain activity, but they also said she wouldn't regain her brain stem activity (breathing on her own, etc.) but she has. They say she can't/won't be able to do certain things, then when she does, they can't explain it. So, only God and Kayli know what is to come... for now, we are just enjoying our limited time with her. We want her home, whether it be to pass or live. Our goal is to get her home without the ventilator... very possible.

The kids are going through a very tough time, but it seems like things are getting better for them. We did a lot of momentous things with them last Sat. and have instilled it in their heads that Kayli's body is not as strong as her spirit. We've asked them to talk to her spirit, not her body, and to ask God for guidance in this, our difficult times. We've told the kids that when we go on our Disney (Make a Wish) trip this Dec., we were going to have to leave Kayli in respite care during the day. If she passes before then, they can call upon her to hop on their shoulder and ride a roller coaster ride with them... she will fit the height requirements, and can join our family in the fun! We told them all they need to do is be open to her spirit, and ask God to help them stay connected to her.
We are grateful Kayli has given us the time she has, so that we know who she is... stubborness and all! I am happy that I was able to pick out outfits that I can relate to how good they looked on her (some parents never get to see how that outfit would look on their child). I am grateful I know the strength of Kayli's Will. I will forever remember how it feels to comfort her, and remember how she wouldn't let me hold her against my chest at first. I will cherish the times she endured Mommy's cuddle time, even when she didn't want to. And I will forever be grateful that she learned to trust in me and in time turned to me to comfort her (on my chest). I love the feeling I get in my heart everytime I think of rocking her, singing to her, and humming with her cheek to cheek. I have so many treasured memories of her, and I am grateful for each moment! Thank you baby Kayli!!!! I love you more than words can say... but you already know that. You feel it too, I know. I will always be here for you, no matter where your journey takes us.

Our prayer:
God, please give us the strength to stay in the moment. Help us to enjoy our family as we are. Guide us to make the righteous decisions. Help us to keep our faith in yours and Kayli's plan. Please give Kayli, our family, friends, and medical personel the courage to endure, the love to hold us, and the strength to hold our faith in you. I ask that you keep our connection with Kayli strong, and open our hearts and minds to receive your love. We ask for your help in recognizing your work and our loved one's spiritual existance.
In your name, we pray,
Amen

Update on our Sweet Pea, Kayli aka Miracle Child

Kayli got her vaccinations on Monday, including the live virus, Rotovirus. On Tues. night she had a fever that went away when in the breeze from the air conditioner and then with a fan on her. I figured she was fine since her temp. went down without Tylenol. The next morning, she looked grey to me. I asked the nurse and Rob is they thought she looked grey, and they did not. When I went to give her a feeding (around 2:30pm) she still looked grey to me, so after setting up her feeding, I checked her oxygen saturation rate. It was in the 60's (normal is 95-100%). We called an ambulance when she dropped in the 40's. I gave her some oxygen (100%) and her color came back (she WAS grey) and her sats came back up into the 90's. She was taken to the hospital. She had a fever and needed oxygen to keep her sats up. They ran some tests with the suspicion that she may be fighting a cold, virus, etc. They all came back normal. They xrayed her chest to check for pnemonia, which was negative. She was then transported to CDH (a level 1 hospital). She was then given an Echo (ultrasound of the heart). She was given tylenol again, and her fever came down. Her sats remained in the upper 90's even after they took her off oxygen. Kayli was looking very good, her pulse was down, sats up, and no fever. The cardiologists at CMH (via phone/computer) compaired her Echo with a previous one and decided her heart function looked weaker, which means her heart was about to give out (tired). She was then transported to CMH (children's memorial hospital in chicago). They rushed her here immediately and told me things were not good, she may need emergency surgery or may not get a chance to have the surgery at all. When she arrived, she had no fever, her sats were 100% with no oxygen and no air canula on (she was completely breathing on her own). And her heart rate was the lowest it's ever been (very good and now in normal range!). She still looked wonderful! I asked for an Echo because she looked back to herself and the last Echo was in the morning when she wasn't looking so good. They said she can't heal herself, and definitely not that quickly! (They don't know my kids!!!)
They were too busy to do the Echo last night, but put her on a very low dose of heart med at 10 pm last night. At 8am this morning, with a very minimal amount of medication (slow drip>not a full dose yet) she had another Echo.... Her heart is strong again, and fully functioning! She did it! She is truly working miracles! Thank you sooooo MUCH for all YOUR prayers!!! She is doing the impossible, and fighting against all the odds! She will stay here overnight just so they can watch her (they can't believe it) and the plan is then to send her back home tomorrow. She will go home to gain weight for the surgery ( in about 3-4 weeks). We are truly blessed to witness such miracles in her!
We love you Kayli!!!

ScArY times...

It was a scary night last night. Kayli's reflex system is maturing, and she is able to "protect her airway" now, which means her gag reflex is in full force (YAH!). The down side of this is that she is fighting some secretions that make their way down her throat (common when an ng tube is in) as she learns how to control her reflex. Well, her feeding tube (ng tube) came out last night... rather she pulled it out (fiesty, she is!). I am trained to put it back in. When I tried, she clamped her throat to protect it and thereby stopped the ng tube from passing in her throat. Unfortunately she also shuts off her airway while she does this. Miss Kayli started turning blue on Mommy (ScArY!!!) So I had to call the nurse out a couple of times to help me with her. BUT all is well, and Kayli is doing great! We just have to breathe in her face and quickly put it in if it comes out again. (Mommy is still a little shaken up though).
Her saturation rate is still in the high 80s / 90s and she is refusing the air (again, our sweet pea fights the air because she can breathe on her own).
So all in all, it is great that Kayli has fully developed her natural reflexes... but scary while she perfects them all the same.

One step back... but more importantly two steps forward!

oh, and the cardiologist had a hard time with her echo (ultrasound) yesterday because Kayli is now rolling on her side!!!!! lol

Our miracle Sweet Pea, Kayli Dawn

Kayli had a check up with her Cardiologist today. He was very impressed with her weight gain. Normally babies with similar heart conditions do not gain weight because the heart is working so hard to compensate for the hole that it uses all the calories the little body takes in and doesn't have enough extra calories to gain weight. Average baby weight gain is half an ounce a day. Kayli is gaining an average of 2 oz. a day! Also, with her diagnosis, Edward's Syndrome (Trisomy 18), babies typically don't gain weight statistically... but we all know Kayli is so strong and doesn't understand she isn't suppose to be doing so well.
The pediatrician is even talking about cutting back her calorie intake because she is growing so rapidly and doesn't need the extra calories!

As you may or may not know, I have taken Kayli off the air canula (well, actually she kept pulling it off her face!) lol. She has been off it for 4 days now, and her oxygen saturation rate is actually higher now than it was when she was on the air. This means she is breathing completely on her own and is now able to keep her airway open on her own. Yesterday she was gaging on some mucus (I know, yuck) in her throat and she turned red. The nurse who was here told me to put her air canula back on her... I cleared out her nose and throat with the bulb thingy and then put the air canula on her. Her sats (blood oxygen saturation rate) dropped and was in the low 70s (yours would be in the 95-100 range) and her heart rate went up to the high 180s (200 is dangerously high). I kept it on for about 10 min. as I watched her struggle. Then I decided to try taking her canula off because she kept grabbing at it trying to take it off her face. As soon as I removed it from her nose, her saturation level shot up to the high 90s and her heart rate immediately went down to the 160s and eventually back down to 140s and 150s (normal for her). The nurse couldn't believe what she was seeing! Later I asked her why Kayli did better when I took it off and she said the only thing she could think of was that older patients who need a resperator to breath have to be sedated because their body's natural instinct is to fight it and breath on it's own... and that maybe she was doing that, breathing on her own with room air and no pressure from the canula. WOW is all I have to say! Amazing! I asked the cardiologist today if it was harming her or helping her having the air canula off and he said it doesn't help or harm her either way, it was just to help her breath and keep her air way open (she had low tone in her throat and needed the pressure to keep the airway open). Keep in mind, she's never been on a resperator and oxygen would be bad for her, so she was simply just on pressurized room air to help force her airway open. I think her reflex has matured and she is able to keep it open on her own now! Again, Kayli just isn't getting that she isn't suppose to do this! ( that's my girl!)

Kayil has a severe VSD (hole in her heart). The hole is in the wall between her two lower chambers. It is 9 mm in size (3/4 of the wall is missing/open). The wall seperates the blood with oxygen and the blood without oxygen. Her blood is mixing as it crosses the wall back and forth, so blood without oxygen is going into her lungs and being distributed throughout her body. The hole is unlikely to close as it would in other conditions because it is so large, and because there isn't much muscle at the location her hole is in so there isn't enough to grow and close the hole. Kayli also has a PDA (smaller hole in another location) and a bad mitro valve. She is adapting to her severe heart conditions and is still thriving!

I asked the Cardiologist when he thought a good time would be for Kayli to have the open heart surgery she needs. I was thinking that as long as Kayli is doing so well and adapting to her heart condition, we should push the surgery out as far as we can because there are no guarentees that she will be able to heal from the extremely invasive surgery and I want to spend as much time with her as we can before we take the risk of losing her. I was thinking we could wait as long as possible and do the surgery as a last resort as she desends with heart failure. Rob on the other hand, was looking at it as Kayli is doing well now, so give her the surgery while her heart isn't worn out and maybe she will have a better chance of surviving the surgery and fully recovering. It turns out, the cardiologist's opinion is this: Normal babies with her heart condition get this surgery at 3 to 4 months (if they survive that long) because it is a very risky surgery by nature, and newborns are even riskier. The more the baby weighs, the better chance of healing and surviving the surgery so the 4 month mark is usually the goal for surgery. Kayli is doing so well gaining weight that he wants her to have the surgery at 3 months because he thinks she will have a good chance of surviving and doesn't want to make her work her little heart in the conditions any longer than she needs to. He said we will plan the surgery for 3 months! (in 4 weeks). I have heard that other babies who have trisomy 18 have been denied surgery until they "prove" they can live for at least 7 months. We were even told to take Kayli home and that if she "proves" she can live for another 4 months, then they will give her surgery. As she lives each day, the doctors are impressed with her lack of "statistical setbacks" and they are more and more willing to "intervene" with her life by giving her the minimal help she needs to adapt to her symptoms.

Kayli will be having an echo this Sat. to see if her holes are closing and if her heart is enlarged. If her heart is enlarged it is likely to strain to pump and she is on her way to cardiac arrest. We are not expecting her heart to be enlarged because a symptom would be no weight gain...and she is gaining a good amount of weight. I am curious to see if our little sweet pea is oblivious to the limitations put on her... I wonder if her holes are getting smaller and closing? I wouldn't be surprised... just amazed.

As I sit here and write this, Kayli is sitting in her chair and is swatting at the dangling toys above her (a normal milestone but not to be done by a child with trisomy 18). Kayli coos now and even flashes a smile at us. We were told Kayli would be severely mentally handicapped and would not reach simple milestones such as lifting her head, smiling, sitting up, etc. The medical field told us that if she lived she would never mentally make it past 6 month milestones. We don't know what her future holds, but I am willing to bet Kayli will look past her condition and will ignore that she isn't suppose to thrive. I thank God for my stubborn little sweet pea!

I pray all of your children are as stubborn as mine are. I pray your children refuse to listen (to the medical field), and I pray your love gives them the strength to set higher goals for themselves than is imaginable.

Wednesday, September 14, 2011

Kayli is 28 months and is Loving Life with Full Trisomy 18! The purpose of this blog will be to make other T18 parents or parents to be AWARE of the AWESOME life to live with the Diagnosis of Trisomy 18 (Edward's Syndrome). I (Kayli's Mommy, Kelly) am new to blogging, so please be patient as I create a wonderland for Kayli's blogspot.

Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥